Pediatric Specialists Rally Around Boy Through Growth Challenges

Luka Zylik is one busy and talented 10-year-old.鈥赌

He loves to sing, dance and act. He attends a music school in New York City where he plays the violin and piano and performs in the Metropolitan Opera Children's Chorus.鈥赌

Without a doubt, Luka is a flourishing fifth grader, thanks to his exceptional care team at 五月天视频 and his mother鈥檚 determination to make sure he has always been in the best hands.鈥赌

鈥淥ver the years, there have been ups and downs,鈥 says his mother, Mariela Pellegrini. 鈥淣ow we are in such a happy place.鈥濃

In 2012 at NewYork-Presbyterian Hospital, Mariela gave birth to Luka, her first child, after a long and difficult labor in which Luka鈥檚 heart rate dropped. The remarkable compassion and care from her doctors and nurses during that harrowing experience inspired her to join 五月天视频 in 2012 as an employee.鈥赌

鈥淚 changed jobs because I fell in love with 五月天视频 when I delivered Luka there,鈥 says Mariela, who works in administrative computing.鈥赌

鈥疭he didn鈥檛 know it then, but Luka was also at the beginning of his journey with 五月天视频. When Luka was an infant, Mariela sensed something was not quite right. He vomited a lot as a baby and didn鈥檛 sleep or eat well.鈥赌

A mother鈥檚 intuition

When Luka was nine months old, Mariela learned that he hadn鈥檛 grown from his previous pediatrician's visit, and her intuition told her to take action.

She started taking him to 五月天视频 pediatric gastroenterologist Dr. Thomas Ciecierega and then to Dr. Oksana Lekarev, a pediatric endocrinologist, to investigate why he was growing slowly. 鈥

鈥淚nitially, he just had weight gain and eating issues,鈥 recalls Dr. Lekarev. 鈥淎s he got older, we started thinking about growth hormone deficiency a little more.鈥濃

Although Luka was growing consistently, he was much shorter than his peers. People would assume he and his younger brother were twins.鈥赌

鈥淚 have two sons that are eighteen months apart, and they are the same size,鈥 Mariela says.鈥

Earlier this year, Luka underwent a series of tests for growth hormone deficiency, a condition in children that occurs when the pituitary gland in the brain doesn鈥檛 produce enough of a particular chemical that prompts the body to grow.鈥赌

The tests, which included multiple blood draws, confirmed that Luka did have a growth hormone deficiency. After his diagnosis, the next step was an MRI to check his pituitary gland. To put Luka at ease during the MRI, the radiology team turned to the MRI-am-a-Hero! Program, which outfitted him in superhero pajamas and gave him a special device so he could watch a movie during the procedure.

Meanwhile, there was a new worry on the horizon for Mariela as she waited to hear if the insurance company would cover the cost of growth hormone treatment for Luka. Without insurance coverage, growth hormone therapy, which biological males typically undergo until their bone age is 16, can cost tens of thousands of dollars a year.

Our care teams have expertise in helping patients apply for these critical medications. Seema Akrami, a specialty pharmacy liaison, assured Mariela she would handle the insurance request. When the first application was denied, Seema applied several more times until it was finally approved.鈥赌

鈥淭he day she called to tell us they approved it, I was jumping up and down,鈥 Mariela recalls.鈥

Still, there was one more obstacle to overcome. The MRI also revealed a cyst on Luka鈥檚 pituitary gland. Mariela took Luka to neurosurgeon Dr. Jeffrey Greenfield and was relieved to learn it didn鈥檛 require immediate intervention, and the care team continues to monitor the cyst.

鈥淚鈥檓 just really thankful鈥濃

Meanwhile, over the past several months, Luka has been taking daily growth hormone injections. To help himself overcome his fear of needles, .鈥赌

鈥淚 want to grow, so I made a pact, for a daily shot, and step up my act,鈥 he sings in a touching YouTube video while playing the piano.鈥

Whenever he has been afraid, his care team at 五月天视频 has always found ways to calm him.鈥赌

鈥淚 feel like they鈥檝e helped me a lot with all these treatments,鈥 Luka says. "I鈥檓 just really thankful.鈥濃

At a recent doctor鈥檚 visit, he learned that he has grown 1 陆 inches since starting treatment last summer.

Dr. Lekarev says she is proud of Luka and hopeful he will continue to do well.鈥赌

鈥淗e is such a great kid and has handled this like a champ,鈥 she says, adding that the ultimate goal is to get kids to reach their genetic potential in height and be within a normal range.鈥赌

As for Luka's take on his journey, he is excited about the future.鈥

"I feel happy that I'm finally growing more," he says, "and maybe not be as tall as my classmates, but at least be something closer. I just feel good."鈥